With great pleasure we would like to inform you that on March 14th 2019, there was the first closed screening of a new film about CCHS “Ondine”. The film was created by the authors of the Oscar nominated documentary about CCHS “Our Curse” – Member of the Board in our foundation, Tomasz Śliwiński (director, screenwriter) …
Imagine having to listen to the sound of your child breathing 24/7, because each and every moment it can stop.
Who are we?
We help people suffering from CCHS (Ondine’s Curse) and their families as well as supporting research on finding the cure.
5th International CCHS Research Conference will take place from June 20 to June 23, 2018 in St. Louis, Missouri, USA.
The CCHS Network, in partnership with NORD (National Organization for Rare Disorders), has launched the CCHS Network One World Registry – CCHS NOW).
The CCHS Foundation raised ~ $151,000.00 in 2016. It will fund 2-3 more CCHS research projects in 2017. The two projects funded in 2016, Doug Bayliss’ and Isabella Ceccherini’s, are progressing with interesting results. Polish CCHS Foundation “Lift the curse” supports the CCHS Foundation in raising money for the research.
We gladly inform that actions that were taken by the Polish CCHS Foundation „Lift the Curse” (First International CCHS Day and action “I sail for Leo”) have contributed to CCHS cure research. Polish CCHS Foundation partners with CCHS Foundation, which chose two projects to support.